Ups And Downs. How Do I Figure It All Out?

[Gwen B]

How can you know what's going on? I know that it takes time to heal and that there are bound to be up and down periods but I am so tired again lately.

I have been gluten-free since Nov 1 '07 then and began to feel better immediately. No more stomache aches, D and more energy until the dairy intol crept up on me. I adjusted again and things seemed better then a couple of things were bugging me so I dropped soy and I'm not sure of eggs yet, just to be safe. I was feeling better again then a cc incident I still can't pinpoint for sure has left me so fatigued and weary, both in body and mind. I'm not depressed just a little down over not having any energy to get on and do stuff. If I do, I end up needing to nap. The cc was over a week ago and I don't get really severe reactions, just bad stomache and maybe D for a day followed by a 24hour headache and general malaise for a few days. I have been popping varous supplements but been careful to make sure they are gluten-free, cf, sf except Wholefoods Aminos which simply state that 'good practices used to segragate wheat, soy etc. in the processing facility' .

Today I thought I was feeling better but after breakfast today I started to get stomache cramps, not like I usually get with Gluten at least not for a long time but not sure if I have been cc'd with either gluten or soy. There are too many culprits!

1. I caught my son serving his broccoli with the same spoon he'd used for the (bought) chinese food last night.

2. I put on some lipstick last night which probably had tocopherol acetate in it, no idea what else as the label is too small. Why did I do that ? Duh!

3. I have been eating peach jam which was homemade before I went gluten-free therefore probably cooked with old pans and wooden spoons. Very sad as it's so good

4. Any number of minute cc possible in a kitchen used by the rest of my non gluten-free family. They are not really convinced that there is a problem with crumbs

5. perhaps I just have a virus. I feel very brain fogged and dizzy today. In fact ever since the cc incident last Monday!

6. Is it possible to be intolerant to another food now ?

Sorry about the rant. Any Detectives out there?

Don't have a formal diagnoses but haven't got around to doing the gluten challenge yet as I know it's going to hurt but at least then my family and others (namely my Dr.) might take me seriously. Sigh

[Lisa]

Sorry Gwen that you aren't feeling well. It takes a good while before you have the diet down pat. Mistakes can be a common thing in the begining.

Just hang in there and do the best you can. That's all you can do.

[Gwen B]

Sorry Gwen that you aren't feeling well. It takes a good while before you have the diet down pat. Mistakes can be a common thing in the begining.

Just hang in there and do the best you can. That's all you can do.

Thanks, I appreciate your kind words and all of the information on this forum is so wonderful. My daughter just told me that perhaps I should see the doctor in case there is something really wrong with me! My Dr says I must be fine because my bloodwork is ok. So I keep taking the vitamins!

Sorry about the whinge, I'm working it out with the help of this forum. Thanks again.

[skinnyasparagus]

I feel your pain. My house is totally non-gluten free except for what I use and since I know I share utensils, I got into the habit of rewashing everything and religiously stick to taking digestive pills. It was kind-of-sort-of-not-really-funny when I went to reach for a fork and saw that it had a tiny bit of cheese on it that was used beforehand for chicken parm. Ha, caught it just in time! I know it's taking a lot to get used to. I'm having such a hard time letting go of dairy.

On another note, about the seriousness of family members. When I was going to sadly microwave the gluten-free waffles I had instead of toasting them my mom asked 'Why aren't you toasting them like you normally do?" And I told her why. So then she looked at thet table where a crumb from her mini bagel happened to be and pounded it

Riiiight. She cares. My BF cares more than she does. He literally ransacked his cabinets and seperated the gluten-free stuff from the non-gluten-free stuff. And today when he saw me he said, "I ate no bread today. Can I kiss you?"

So lucky to have him!

[Gwen B]

In your situation where despite your best efforts you may get some gluten maybe it would be best if you became more certain that you had gluten problems and could prove it. From what I've read you could just order the DNA tests (about $200) from Enterolab and have the stool tests too if you can afford it. You can order the tests yourself on their website. You probably wouldn't have to have the biopsy after you have the DNA results. Then you will have someting to show your family and can explain to them what will happen to you if you eat any gluten. Then with their support you can begin to sort out whether you have developed allergies or other problems associated with this condition. Other people on the forums write that it is not necesary to do the gluten challange and biopsy if going on a gluten free diet makes a noticeable improvemt in your health and somebody here might be able to help you find a good "gluten aware" Dr in your area who would take you seriously.

Good luck and remember your anxieties will lessen as you heal.

thanks everyone,

in fact, things have come to a head recently. I got up enough courage to try gluten again to see what would happen and proove I wouldn't seem so crazy to beleive I am gluten intolerant. On Tuesday, I ate two slices of bread, and the action felt quite repellant, maybe it is all in my head! . Fortunately, no hives, but later on I did not have any major reaction, just gas, bloating and weirdly, I kept burping all afternoon and didn't stop until the following evening! I am glad I didn't suffer the awful stomach pain or D but also bewildered. It wasn't that bad either although I felt uncomfortable enough to avoid trying any again and if fact have avoided any 'difficult' foods that are difficult to digest since Tuesday. Everything seems to make me feel icky and I don't have much appetite. Every food I ate after eating the bread seemed to cause more bloating feeling,gas and burping. I still haven't had any more reaction (Friday).

Wednesday evening my lovely husband cooked dinner while I went to a school meeting, pasta (regular wheat for them) and gluten-free bognaise sauce. When I went to get some for myself I noticed that the non gluten-free ladle was in the sauce along with a piece of wheat pasta. My kids then argued about whose fault it was and then my hubby says, 'oh well, it's not like you're really sensitive'! Not the point! Grr So I have ordered Enterolab celiac panel and will deal with the flack of spending extravagently later! I need to know for sure for my own peace of mind as well as to quash all gluten-free dissidents! Ha!

[moon-gypsy]

I think you really need to break down and get tested so that your family will take you seriously. I understand why you haven't done it yet--I haven't either. I just can't bear to have another doctor pat me on the head and tell me I'm fine. I live in a VERY paternalistic community, and for the last 16 years I have struggled to get a doctor to take me seriously. I get the "you're thin, and you look great so you must be healthy" attitude all the time. So why the hell did I have to stop and rest when I'm halfway up the stairs? Why was I always starving? I ate constantly, and I was slowly losing weight anyway. I'm a 5'7", 39 yr. old mother of three, and there is no way I should have been 126 lbs. Sorry, I digress.

Long story short: My husband has been extremely supportive even though I am only self-diagnosed. And still I am struggling. I have moderate digestive symptoms as well as skin symptoms. My skin is apparently more sensitive than my gut to cc issues. At the moment, I am so broke out I could cry. I've been gluten-free for 5 months, and it has been up and down the entire time. But it is dawning on me that I am more sensitive than I would ever have imagined. This is harder than I thought it would be. FOR ME, THIS WOULD BE IMPOSSIBLE WITHOUT THE SUPPORT OF MY FAMILY.

The thing is. . .even if, like me, you aren't deathly ill, the effects of celiac will just keep getting worse. Don't wait until you are so sick that they have to take you seriously, because you will eventually get there.

My best to you. Take care of yourself. If you don't, who will?

-D

[peanut369]

Sadly, I didn't get support from the family until my night pains were so bad I was waking the kids up screaming when I tried to roll over in my sleep (they told me about it in the mornings - I was basically unaware I was vocal about the pain).

I too began recently, experienced wonderful results the first two weeks, then began the roller coaster.

What I've learned so far:

1) If you buy gluten free products, read labels and know what they mean. I tried gluten free five or so years ago and quit because it didn't seem to work. I got sick anyways. Now that the intolerance is worse, and I'm trying again, I found out that a gluten free brand that I HAD relied heavily on in those earlier years can NOT guarantee their products are actually gluten free. Many "Annie's" products only say, "Non Gluten Ingredients" -- that gets them off the hook for any preparation errors or cross contamination.

2) Don't take any flack. It's my health, not "the dissidents". Personal strength is the only saving grace. That and not wanting to be hurting all the time from various manifestations of the intolerance.

3) It's OK to live on a severely restricted diet. I can actually live for a week on long grain rice, green peppers and onions, and hamburger made from nice lean roasts (I grind my own at home).

4) Casein can be just as bad as gluten. It is in milk, dairy products and can be an ingredient unto itself in some things like soups. I get the same reaction from casein as I get from gluten. I don't know about others yet.

5) Now that I've toughed it out for a while, I'm actually getting to be OK (I don't think I'll ever be PLEASED) with the idea of the diet. Being a professional, and needing to be 'on' all the time, no matter what, it's a small price to pay for being in control of my own life.

6) I can finally lose weight!

7) Bob's Red Mill products are yummy, easy to make, (especially the "Mighty Tasty Hot Cereal") and tested to be gluten free. It's the only gluten-free product I actually TRUST. The rest of the store-bought gluten-free products I am skeptical of and always consider a gamble.

8) Though soy milk is gluten-free, I get this weird reaction that I think is from the carageenan. I can drink Rice Dream, original or vanilla, with no reaction of any sort. Even the coffee tastes yummy, with no big gas or well... you don't wanna know.

[sallyterpsichore]

I hope I'm not hijacking the thread, but I can't imagine living in a house with gluten food around all the time, just waiting to contaminate your food. Whenever I visit my parents, we have to keep such a close eye on where each knife has been and which container of butter I can use, etc. etc., that it's just exhausting.

I'm single and living alone with no roommates, but when I think about my future and possibly getting married and having kids, I'm pretty certain that they'll have to be gluten-free too. It's not that big of a deal, once you get the hang of it. I mean, they can go out to get bread, bagels, pastas in restaurants, etc., but most recipes you can make gluten free and no one would even notice. Have you talked with your family to see what they'd think about making the diet change together?

Just my thoughts,

Sally

[Gwen B]

Sadly, I didn't get support from the family until my night pains were so bad I was waking the kids up screaming when I tried to roll over in my sleep (they told me about it in the mornings - I was basically unaware I was vocal about the pain).

I too began recently, experienced wonderful results the first two weeks, then began the roller coaster.

What I've learned so far:

1) If you buy gluten free products, read labels and know what they mean. I tried gluten free five or so years ago and quit because it didn't seem to work. I got sick anyways. Now that the intolerance is worse, and I'm trying again, I found out that a gluten free brand that I HAD relied heavily on in those earlier years can NOT guarantee their products are actually gluten free. Many "Annie's" products only say, "Non Gluten Ingredients" -- that gets them off the hook for any preparation errors or cross contamination.

2) Don't take any flack. It's my health, not "the dissidents". Personal strength is the only saving grace. That and not wanting to be hurting all the time from various manifestations of the intolerance.

3) It's OK to live on a severely restricted diet. I can actually live for a week on long grain rice, green peppers and onions, and hamburger made from nice lean roasts (I grind my own at home).

4) Casein can be just as bad as gluten. It is in milk, dairy products and can be an ingredient unto itself in some things like soups. I get the same reaction from casein as I get from gluten. I don't know about others yet.

5) Now that I've toughed it out for a while, I'm actually getting to be OK (I don't think I'll ever be PLEASED) with the idea of the diet. Being a professional, and needing to be 'on' all the time, no matter what, it's a small price to pay for being in control of my own life.

6) I can finally lose weight!

7) Bob's Red Mill products are yummy, easy to make, (especially the "Mighty Tasty Hot Cereal") and tested to be gluten free. It's the only gluten-free product I actually TRUST. The rest of the store-bought gluten-free products I am skeptical of and always consider a gamble.

8) Though soy milk is gluten-free, I get this weird reaction that I think is from the carageenan. I can drink Rice Dream, original or vanilla, with no reaction of any sort. Even the coffee tastes yummy, with no big gas or well... you don't wanna know.

Might it not also be the soy? I have also noticed something bugging me recently and have wondered about carigeenan in rice milk or hemp milk which I love. Tapioa flour is not easy for me to digest and I'm avoiding that now. I was alarmed that on a packet of bacon it actually stated on the packet 'casein free'. Does that mean there is casein in some other brands of bacon? I don't eat a lot of bacon but I had thought it would be a safe menu item if I went out to eat breakfast!

[Gwen B]

I hope I'm not hijacking the thread, but I can't imagine living in a house with gluten food around all the time, just waiting to contaminate your food. Whenever I visit my parents, we have to keep such a close eye on where each knife has been and which container of butter I can use, etc. etc., that it's just exhausting.

I'm single and living alone with no roommates, but when I think about my future and possibly getting married and having kids, I'm pretty certain that they'll have to be gluten-free too. It's not that big of a deal, once you get the hang of it. I mean, they can go out to get bread, bagels, pastas in restaurants, etc., but most recipes you can make gluten free and no one would even notice. Have you talked with your family to see what they'd think about making the diet change together?

:PJust my thoughts,

Sally

I've mentioned it a couple of times, half jokingly and it was not well recieved. They are all too hooked on gluteny starchy foods but they have been warned that if they continue to be sloppy with their crumbs that will ultimately be their punishment. I doubt they think it's a real threat but my hubby did throw the 'Food for life Bread' at my son who complained it hurt mightily and should be construed as a weapon

Feeling better this week anyway, just a little tired still. 4 months and counting!